Parent well-being and ASD

1. Parent well-being and ASD Psychology Department Beechpark Services January 2012 Presented by: Louise Condon, Educational Psychologist Dr. Lorraine Crawley, Clinical Psychologist Beechpark Psychology Department January 2012

2. Overview of parent well-being • Background • Process of ASD diagnosis • Formulation and collaboration • Model of support • Beechpark research study Beechpark Psychology Department January 2012

3. Background • Impact of ASD on family • Published literature on parental stress and well-being • Lazarus & Folkman (1984) stress model Beechpark Psychology Department January 2012

4. ASD diagnosis • Cross-sectional ROI and NI study (Keenan et al, 2010) • Questionnaires completed parents and multi-disciplinary professionals • Mean age at ASD diagnosis: 4 years (1.7-13 yrs range) • Time between first referral and diagnosis in the study was an average of 16 months in NI and 14 months ROI • Some pursued private diagnosis (reduced length of time between referral and diagnosis) Beechpark Psychology Department January 2012

5. ASD diagnosis • 99% of parents and professionals agreed increased support and guidance during process should be in place for families • Reports of problematic parent and professional partnerships • Parent stress: Diagnostic and planning processes Beechpark Psychology Department January 2012

6. Confirmation of ASD Diagnosis – Processing the diagnosis • Gender (e.g. Pozo, 2010) • Cultural (e.g. Daley & Sigman, 2002) • Emotional response (e.g. Lutz, Patterson & Klein, 2011) Beechpark Psychology Department January 2012

7. Confirmation of ASD diagnosis • Where next? • Informing wider family and response • ‘Battle fatigue’ • Resources for support and intervention Beechpark Psychology Department January 2012

8. Formulation and collaboration • Experience of diagnostic process • Expectations of parent role • Previous life history • Key issues at developmental stages • Living with Autism Beechpark Psychology Department January 2012

9. Formulation and collaboration • Building a therapeutic alliance • Assessing level of stress and well-being • Motivational interviewing • Consultation with clinical team Beechpark Psychology Department January 2012

10. Assessment of parent stress and well-being • General screening measures e.g. Parenting Stress Index (Abidin, 1995) • Significant life events • Care plan process – strengths and needs based • Interweaved questions on the theme ‘How is the family?’ Beechpark Psychology Department January 2012

11. Parent groups and programmes • Service groups (e.g. Parents Plus) • Other agencies (e.g. Incredible Years) • Parent community groups • Online groups Beechpark Psychology Department January 2012

12. Model of service delivery to parents • Information (e.g. Beechpark Parent support leaflet) • Parent groups Level 1 – Education about ASD (e.g. Early Bird) • Parent groups Level 2 – Strategies to parent a child with an ASD (e.g. Emotions, Growing Up) • Individual work (e.g. Behaviour programmes) • Area identified for development: Parent well-being Beechpark Psychology Department January 2012

13. Individual coping responses • The stress response and ASD • Increasing positive mood, e.g. seeking support, positive reframing (Pottie & Ingram, 2008) • Feeling in control over stressors one of the biggest factors influencing the effect of stress on health • Q. What would help feeling in control over stress arising from being a parent to a child who has a diagnosis of ASD? Beechpark Psychology Department January 2012

14. Beechpark research Examining a well-being intervention for parents with children who have autism. (Condon, L., Crawley, L., Cummins, P., Fitzpatrick, C., & O’Reilly, A.) Beechpark Psychology Department January 2012

15. Factors influencing wellbeing and adaptation • Characteristics of the child with ASD (e.g. Bravo, 2006) • Social support (e.g. Boyd,2002) • Coping strategies (e.g. Hastings et al.,2005) • Perception of problems (e.g. Pozo,2010) Beechpark Psychology Department January 2012

16. Sense of Coherence (SOC) • Comprehensibility - the ability of the family or individual to understand life situations and give them order and structure • Manageability - the ability to handle or respond to situational demands or the feeling that one is capable of obtaining the necessary resources to do so • Meaning or Sense - the extent that one feels that life makes sense • ASD and SOC (Pozo,2010) Beechpark Psychology Department January 2012

17. Methodology • Group Intervention • CBT based model (6 sessions) focused on: • problem solving • cognitive restructuring • monitoring thoughts and feelings Beechpark Psychology Department January 2012

18. Methodology • Participants • Convenience sample Instruments • Demographics and family characteristics Q. • The Parenting Stress Index–Short-Form (PSI-SF) • The Positive Contributions Survey (PCS) • Depression Anxiety Stress Scales (DASS) Beechpark Psychology Department January 2012

19. Thank You Beechpark Psychology Department January 2012

20. References • Abidin, R. (1995). Parenting Stress Index: Professional Manual (3rd ed.). Odessa, FL: Psychological Assessment Resources Inc. • Boyd, B.A.(2002).Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities,17(4),208-215. Beechpark Psychology Department January 2012

21. References • Bravo,K.(2006). Severity of autism and parental stress: The mediating role of family environment. Dissertation Abstracts International Section A: The Humanities and Social Sciences, 66(10),3.821. • Daley, T. & Sigman, M. (2002). Diagnostic conceptualisation of autism among Indian psychiatrists, psychologists and paediatricians. Journal of Autism and Developmental Disorders, 32(1), 13-23. Beechpark Psychology Department January 2012

22. References • Hastings,R.P.,Kovshoff,H.,Brown,T.,Ward,N.J, degli Espinosa,F.,& Remingtin,B. (2005). Coping strategies in mothers and fathers of preschool and school age children with autism. Autism,9,377-391. • Keenan, M., Dillenburger, K., Doherty, A., Byrne, T. & Gallagher, S. (2010). The experiences of parents during diagnosis and forward planning for children with Autism Spectrum Disorder. Journal of Applied Research in Intellectual Disabilities, 23, 390-397 Beechpark Psychology Department January 2012

23. References • Lazarus, R. S. and Folkman, S, (1984). Stress, Appraisal, and Coping. New York: Springer. • Lutz, H., Patterson, B. & Klein, J. (2011). Coping with autism: A journey towards adaptation. Journal of Paediatric Nursing, Accessed online at http://www.sciencedirect.com/science/article/pii/S0882596311001916 Beechpark Psychology Department January 2012

24. References • Pottie, C. & Ingram, K. (2008). Daily stress, coping and well-being in parents of children with autism: A multilevel modeling approach. Journal of Family Psychology, 22(6), 855-864. • Pozo, P. (2010). In Pozo, P., Sarria, E. & Brioso, A. (2011). Psychological Adaptation in Parents of Children with Autism Spectrum Disorders. Accessed online at: www.intechopen.com/source/pdfs/20034/InTech-psychological_adaptation_in_parents_of_children_with_autism_spectrum_disorders.pdf. Beechpark Psychology Department January 2012